Waiting for a kidney

Jacob Wengreen receives dialysis treatment through an AV fistula in his forearm. The AV fistula is more appropriate than other methods for long-term patients like him.
Courtesy photo

LOGAN — “I said, ‘You have the flu. Get over it.’ Nice wife I am,” she said with tears in her eyes as she described her reaction to the first symptoms her husband Jacob experienced before being diagnosed with severe kidney failure.

It was during the summer of 2009 that former Kemmerer resident Camille Breese Wengreen’s husband Jacob was suddenly unable to keep food down, was vomiting acid and started experiencing night sweats and shakes, common symptoms of many less serious health problems.

It’s been three years since his diagnosis and three years of having their hopes raised and then dashed. According to Camille, a person can live for 10 years on dialysis and Jacob’s already into year four. He’s only 25, and the couple’s son, Brody, will be two years old in March. They should be looking forward to expanding their young family; instead they’re waiting to hear about a kidney for Jacob, which is almost exactly what Camille named the Facebook page she created, A Kidney for Jacob Wengreen.

Jacob is on “the list.” In fact, his kidney failure is so severe — he has only five percent function of both kidneys, or 2 1/2 percent of each — that he’s prioritized with patients that are much, much older.

Three times a week for four hours at a time, Jacob undergoes dialysis. This is what keeps him alive. According to The National Kidney Foundation, without dialysis someone like Jacob would live for one to several weeks, depending on kidney function and overall medical condition.

And while it is the dialysis that keeps him alive, it’s not without a price — both physical and financial. Sometimes after dialysis days, he feels great; on other days he’s wiped out and sleeps on the way home and into the next morning and is uninterested in meals.

“I watch him get sick all the time, I watch him pass out, I watch him get lightheaded. It’s not easy. It’s been very hard,” said Camille.

The cost of keeping him alive is daunting. His dialysis sessions cost $250 to $400 each, only a portion of which is covered by Medicaid and Medicare. That’s a big burden on a young family.

Assuming he feels good, there are many other considerations the family has to make. Daily meals, something many of us take for granted, require adherence to specific restrictions. Jacob can’t eat a lot of things with potassium and is limited to about one potato a month. He has to watch his water and liquid intake, watch the amount of calcium in his diet, and stay away from dark sodas and fatty foods — just a few of many details that require the couple’s attention.

Other important details are related to medical complications, some of which are byproducts of the dialysis treatments itself.

Jacob’s dialysis was previously administered through a venous catheter in his chest but is now done through what is called an arteriovenous — or AV — fistula, which lasts longer than other methods and is less likely to develop clots or become infected. The AV fistula is formed when a surgeon connects an artery to a vein, increasing blood flow and making the vein stronger, larger and better able to withstand repeated needle insertions necessary for dialysis, especially for long term treatment like Jacob’s. Jacob’s AV fistula is located in his forearm.

But although this method may be preferable for someone like Jacob, it isn’t without potential complications; Jacob recently had to have surgery to create new “buttonholes” for his AV fistula because the original buttonholes became clogged.

Lab tests are another part of their life as a result of Jacob’s condition and diagnosis, the results of which sometimes require yet more surgery and treatment. Recent results showed high levels of phosphorus and calcium. Treatment for those elevated levels included removing his parathyroid glands, located behind the thyroid in a person’s neck, “dicing them up” as Camille described it, and having them transplanted into his forearm to help regulate his calcium levels.

All of this effort, time, money, heartache and pain is devoted to one goal: keeping Jacob alive long enough to get him a “new” kidney, which is a process that might be more painful and full of ups and downs than all of his medical treatments combined.

Just a quick glance at 2012 posts on Camille’s aforementioned Facebook page, and one gets a feel for just how difficult their wait is:

Feb. 9: Been on the transplant list for 22 months. The wait is 18-24 months. Hoping I hear something this summer.

April 9: Got a call back from the transplant center — the kidney was a better match for someone else. Jake is a little upset and frustrated, but it will come. That call almost answered our prayers, but it was better for another person.

June 6: Might have a kidney! Oh, keeping our fingers crossed!

June 18: Kidney is a no-go! Bless the family who got their prayers answered! I love you, honey; your time is near.

Sept. 9: Well, got another call for a kidney — it might just be promising! Please, Lord, let it be our turn.

Sept. 25: Almost had a kidney over the weekend but got the call it [that it] was better for someone else [on] Monday afternoon. That family’s prayers were answered, but will we ever get the call that it’s my husband’s? He has had about 10 calls saying “Sorry, not this time.” Continue the prayers.

Says Camille of the rollercoaster ride that is their life, “Guys don’t show their emotions, so when he gets a call saying the kidney’s not his, it’s starting to get to him more. He’ll just kind of turn away and not talk to me. But he never says, ‘I just want to quit. I don’t want to do any of it anymore.’ I think I do the emotion for him. But I don’t let him see that it gets to me.”

And the difficult truth about any potentially available kidney isn’t without some emotional conflict. Camille said that she hadn’t thought too much about the source of a potential kidney until recently.

“I haven’t really thought about it a lot until just lately. He can’t get a cadaver, because once you die your organs are no good…so it’s somebody on life support, and that’s a little hard. Some family is saying goodbye, and who knows how long they’re going to keep the person on life support. It’s kind of hard that way, just to think somebody’s saying goodbye to their family member,” she said.

But even in the face of death and tragedy there can be hope, and this is what patients like Jacob — and their families — cling to, even in the face of disappointment. The Wengreens are young and facing odds not necessarily in their favor but are determined to persevere. Take a look at the “A Kidney for Jacob Wengreen” Facebook page Camille started to see what hope looks like in this digital age and visit www.kidney.org to find out how you can help, especially in the wake of Hurricane Sandy.